No Brakes

My dad has only been enrolled in a hospice for one day, and I am already thinking I may have made the wrong choice.

My friend Mike is a hospice executive. He has been advising me to get hospice services for a long time. I have been trying to decide among a CNA, an ALF, and hospice care. I wanted to save money, get better care for my dad, and put some order back in my own life. Those were my goals.

Yesterday, the hospice sent a nurse around to evaluate my dad and see if he was an appropriate candidate for hospice care. He got the go-ahead from a doctor via telephone, so we signed up. I was told we could get equipment and a number of helpful services, all on Medicare’s dime. What’s not to love? Even if he goes to an ALF, they can care for him. The ALF will let them come in.

Hospice care is for people who are dying, and my dad is in that group. His dementia will kill him before long, no matter what anyone does for him. If he lasts two more years, he’ll be doing great. He could have more strokes and go next month, however.

It seemed like a no-brainer. Who turns down free government health care? I saw no down side, so I signed him up during the first visit.

There were a couple of things that confused me, however. The doctor talked about cutting off some of his medications. Blood pressure pills and a statin. When she said we should stop giving him the statin, the nurse agreed, saying there was no point in it any more.

I told them he had a cardiologist, and I said we would have to run things by her. They agreed. I thought maybe the hospice doctor had different ideas about statins and blood pressure medications for elderly patients.

Today I talked to Mike, and he explained something to me. They want to cut off the circulatory medicines because they may be keeping my dad alive.

When he said that, I realized I had misunderstood how hospice care works. They aren’t just interested in providing care. They want to pull out the stops so he declines and dies faster.

This is not the kind of thing you ordinarily expect to hear from medical professionals.

Apparently, once you put someone in hospice care, they are supposed to cut off all treatment which is intended to cure the patient or prolong life. I did not understand that. I thought they just provided care for terminally ill people, without getting involved in decisions about treatment.

For quite some time now, I have been against taking heroic measures to keep my dad alive. I have been afraid his cardiologist would try to get him a heart bypass, for example. You can imagine the difficulty of caring for a dementia patient who wakes up every day unaware that he is recovering from major surgery. It would be very hard, and then he would still die from dementia in a fairly short time.

I don’t want doctors to do backflips to extend my dad’s life, because it will just make everyone involved miserable. On the other hand, I never dreamed they would want to take him off his prescriptions. Prescribing a few pills is not a heroic measure. He’s going to fade and go pretty soon whether he takes them or not. I don’t see the harm in giving them to him while he is still able to walk, talk, and exercise a certain amount of reason.

My aunt started speaking gibberish when vascular dementia got her, and she became bedridden. Fair enough. When that happens, I won’t even want to give him aspirin. It’s pointless to turn a strong body into a life support system for a brain that doesn’t work. I do not like the idea of cutting his medication off now, however. I would not have supported measures to make my aunt speak gibberish sooner.

If we deprive him now, I feel we will be attacking both mind and body. His mental problems are caused by circulatory issues, and it may be that his pills retard the progress. The mind isn’t the villain here. As long as it works to some degree, it should be defended. When the mind is gone, the body becomes, in a way, the enemy. You can keep a body pumping blood for a very long time after someone’s natural lifetime has passed.

I’m a very smart guy, so there are distinctions that are concealed from other people yet which are very obvious to me.

For one thing, I understand the big difference between proactive measures and passive measures. Putting a pillow over someone’s face is proactive. So is assisted suicide. I’m against those things, because they exceed the authority God has given man. On the other hand, allowing someone to die naturally without extraordinary intervention is often morally correct.

Major surgery would be proactive and an extraordinary effort, in the case of an 87-year-old man with rapidly progressing dementia. So would hooking hooking him up to pumps and tubes. These things would be true even if he still recognized people and was able to enjoy life to some extent. The benefits, if any, would be outweighed by the additional suffering, and they would be fleeting. Giving him three or four pills a day, while his mind is still firing on a few cylinders, would be proactive but not extraordinary.

Taking away a dementia patient’s heart pills seems a little like kicking at his cane while he shuffles by. He will go in his own good time, and he won’t inconvenience the rest of us by holding on for a decade like an Alzheimer’s patient. There is no need to grease the chute.

Suddenly I feel, in my heart and not just my mind, how serious this situation is. He’s really going. His problems are so bad, I can legally withhold medication from him in order to hasten his death, and then I can inherit from him with the full consent of the local state’s attorney. How wrong that feels. Think what the Menendez brothers would have given to be in my shoes.

Society isn’t just willing to help my dad pass without turmoil; it wants him to get it over with, and it assumes I’m on the same page.

I can’t believe there is no one to advise me. What a strange system we have.

Mike has been more helpful than anyone, but I still misunderstood him, and there is no one else to answer my questions. Because my dad has Medicare and a supplemental plan, he is well-funded, and everyone is eager to sell him tests, therapy, and treatment, but no one wants to sit down with me and tell me what’s what. I am learning things as I go, when I should at least have a pamphlet to tell me what to do.

I’ll admit something. I have prayed, telling God that if my dad isn’t going to change inside, I would like him to go sooner rather than later. Does that make me a bad person? I don’t want to have to deal with abuse and selfish behavior for the next ten years, toward no constructive end. I don’t want to be trapped in caregiving forever, and I don’t want to keep pumping time into an unequal yoking. Still, I don’t want to get involved in carnal efforts to end his life.

How different things would be, with a different patient. If my dad were 6, I’d be pushing for every conceivable treatment. If he were his current age and sound of mind, I’d be taking every reasonable measure to keep him alive as long as he wanted. Because he is very old and afflicted with incurable, progressive, fatal dementia, I can’t think that way. As far as his needs go, I can only think of two things: his comfort and his salvation.

I wonder what my mother would do if she were here. I think she would do exactly what I’m doing. She would work to keep him going as long as practical, and then she would let go out of fatigue and resignation.

We will see the cardiologist tomorrow, and I will do my best to pin her down and get some real input concerning his medications. I will let her know about the hospice doctor’s recommendations. As of right now, I plan to insist he continue to receive his pills, even if it means taking him out of the hospice program. If he becomes incoherent later, we’ll start over, and I’ll probably let them make the changes.

I believe God told me he had cut my dad off. I think he told me my dad was going to decline and go away, because he had held onto the hardness of his heart into old age. I accept that, even though I still work on his salvation, which is a separate matter. I believe God has told me my dad will be saved.

If he were a Christian, I’d be doing my best to get him healed of his dementia. As it is, I think it’s too much to ask for. His attitude toward God is not good. I can’t tell you how many times I prayed about his dementia in the past. It didn’t work, and I finally quit. If, by some work of God, his heart changes in the future, I’ll do my best for him, but right now, I’ll be satisfied if he gets a firm grip on salvation.

I thought I had accepted my dad’s mortality, but now that they want to take him off his prescriptions, I feel that I have been in denial. It’s strange; had I awakened yesterday and found him dead, I would have been okay with it because I am prepared, but the thought of depriving him of medical treatment and watching him fail is sobering and somewhat repugnant.

I feel I have a plan now, so tomorrow we’ll put it into effect. If we have to give up the hospice benefits for now, so be it. I can’t push my dad into the grave just because he’s rude and hard to care for. An ALF will take the weight off my shoulders without involving me in something morally dubious. There is more than one way to deal with verbal abuse and horrifying hygiene problems.

If you’re in the same position I’m in, you should think about what I write. It can help you avoid the mistakes I make.